BRCA surgeries: what did you have, what follow up will you get?

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Hello,

I’m really interested to hear what choices others made re mastectomy with/without reconstruction, and re ovary removal.

 

I tested BRCA2 positive last month, (half way through rads!). Have had FEC T, WLE, 15 rads for 2 triple negative grade 2 & 3 tumours. Now waiting for gynae and breast surgeon appointments for risk reducing surgery. 

Mastectomies

I’m not sure I want reconstruction - mx does not 100% remove risk of further bc in BRCA, so I feel if I can still see the chest wall area I might spot any future abnormalities more easily. I know this is not entirely rational, but am I making any sense here?.

 

Are you BRCA positive? What follow up are you getting, and how often?

 

Even if I was to be offered regular MRIs (which I may not be as I am over 50), I dont feel I would trust them 100%, because my two tumours appeared to be one large one on my pre and post chemo MRIs.

 

Do you have any sensation in reconstructed breasts? I’ve lost nipple sensation after WLE, so even if it is possible to keep my own nipples, is there any chance of any sensation?

Ovaries

Did anyone have hysterectomy rather than just ovaries and fallopian tubes?

 

I may not have the option of laparoscopic removal (due to previous abdo surgery), so at 54, 3 years post menopause, no children, is it a good idea to ask to get the womb removed as well? I’ve heard prolapse is very common 50+ for example, so would hysterectomy help avoid or add to potential future problems?

 

I would be really grateful for your thoughts and experiences on either topic, whether you are BRCA +ve or not.

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Hi

You may find more examples of others experiences under the section “Have I got breast cancer? - Family History and Genetics” as I read some of these posts when making my decision earlier this year.

I tested BRACA2 positive while undergoing chemo this year. I’m also triple negative. My original surgery was a WLE but following the BRACA result, I elected to have a double masectomy with immediate reconstruction in October. My reconstruction was strattice and implants. I’m now having radiotherapy to the chest wall which I finish tomorrow. I elected to have a reconstruction because at 37 I wanted to have something rather than no breasts. I still have sensation in my nipples post surgery although less than before but I am happy with the final cosmetic result (although I still have to see how the radiotherapy side recovers yet).

I understand the fear about being able to spot future abnormalities and I have still to discuss what follow up monitoring I should have with my consultant once I finish active treatment.

I also need to decide what to do about my ovaries and I will be starting the appointments/discussions for that next year to decide what to do. I wasn’t in menopause prior to starting chemo so my considerations are slightly different assuming of course the chemo hasn’t triggered an early menopause.

Sarah